Worried about knee surgery

[angela2]

We just found out that Brandon, age 3.5, needs surgery on his knee. The kneecap won't stay in place. I believe it's called subluxation of the patella. The Dr. said that this is difficult to fix with ds because the tendons are so loose. He may have to operate another time (or two) in the future. Anyway, for now, Brandon is in no pain and can walk around fine. He will have to stay in the hospital overnight and wear a cast for 6 weeks. He will be able to walk with the cast. I am worried that he is going to have a bum knee for the rest of his life, and go thru the pain of surgery several times . Has anyone else gone through this?

[Valerie]

I have not heard of this, but my son can move both his kneecaps to the side and back. Is this the kind of thing you're talking about? I just assumed it would stabilize over time, because his neck used to always pop when he turned his head, and it no longer does that.
What do they do in the surgery to fix it?

[justinsmom]

Angela I had something similar when I was around 13, all I remember is they ended up stretching a tendon and stapling it it in place, to help keep the knee cap in place, mine would slip out and lock up on me. So far no problems with it.

[christie]

Personally I have no experience with this but wanted to say HUGS I am sure this is scary for you.

I do know that STELLA'S daughter Sweet Sweet "Sarah" has had Knee troubles and I am sure when she gets on line and sees your post she will reply.

Please let us know how this all goes and praying for you that more then one surgery is not necessary.

CC from New Jersey ~

[angela2]

The surgery would be like Justinsmom described...stapling a tendon to make it shorter. Only problem is with ds, the tendons are so elastic that the knee might not stay in place for long, that's why he could need another surgery down the line.
(I am very glad to hear that Justinsmom had no problems since the surgery!

Valerie...both of Brandon's knees have been popping in an out since he was a baby. But just recently, his PT called me and said the left one was out of place most of the time and sometimes she couldn't get it back in! If you are concerned, I would talk to you pediatrician. I wouldn't have known this was a big problem unless the PT pointed it out. I couldn't even tell WHERE the kneecap was, the PT had to show me! It just looked like a couple of lumps!

[marisa]

We will certainly keep him in our prayers.

Is surgery scheduled? If so, when?

[wrblack]

I'm kinda glad not to have any firsthand experience with this, but I've heard of numerous cases. Dr. Leshin has an essay on Musculoskeletal Disorders in Down Syndrome at www.ds-health.com/ortho.htm
Here's two snips:
<< Almost all of the conditions that effect the bones and joints of people with Down syndrome arise from the abnormal collagen found in Down syndrome. Collagen is the major protein that makes up ligaments, tendons, cartilage, bone and the support structure of the skin. One of the types of collagen (type VI) is encoded by a gene found on the 21st chromosome. The resulting effect in people with DS is increased laxity, or looseness, of the ligaments that attach bone to bone and muscle to bone. The combination of this ligamentous laxity and low muscle tone contribute to orthopedic problems in people with Down syndrome. While these conditions are more common in people with DS than in the general population, it is worthwhile to note that the majority of people with DS will not have any of the disorders I'm discussing in this essay.
...
Knee
Instability of the patella (kneecap) has been estimated to occur in close to 20 percent of people with DS. The majority of cases of instability present only as kneecaps that can be moved further to the outside than the normal kneecap (subluxation); however, some people can have their kneecaps completely move out of position (dislocation), and some may even have a hard time getting it back into the right position. Mild subluxation of the kneecap is not associated with pain, but dislocation may be painful. While people with instability of the patella are able to walk, there is often a decreased range of motion of the knee, with an accompanying change in gait. The longer that nothing is done for the instability, the worse the condition will get over time. Orthoses (special braces) may be useful for mild cases, but severe cases require surgical correction. >>
Sounds to me as though it's a good thing you're on top of this knee problem so soon.
Good luck to you and Brandon,
Bob

[DereksMom]

As far as I know, kids dont develop knee caps until they are about 7. Derek went for an xray of his hip and his knees were in the pic and didnt show any knee caps. I asked how come he didnt have any and the xray tech said that they dont really have any until they are older. I was quite suprised as it was something that I had never heard before.

I just found it curious that they would be doing surgery on something that I thought they didnt have at that age.

[angela2]

I didn't think they had kneecaps either. Maybe they are not fully developed until they are older? Brandon definitely has 'em because you can move it back and forth with your hand
We haven't figured out when we are doing the surgery...I'll keep you all posted!

[angela2]

UPDATE!
I talked to the orthopedic doctor today and he said Brandon doesn't need surgery right away. ;D We are going to try a knee brace for now and see how it goes. He will probably need surgery in the future (six months? A year? who knows?). And he is going to be checked every 6 months to see how he is doing.
The doc discussed Brandon with another doc and decided to do the wait-and-see thing. By the way, these docs are at New England Medical Center in Boston, supposedly one of the best....so I'd hope they know what they are doing!